According to a Harris Poll, 70% of doctors don’t “believe” patients should be able to get FULL copies of their electronic health records.

But patients have always had the right to copies of their paper medical records—it was just a hassle to get them. HIPAA, HITECH, and the Omnibus Privacy Rule all affirmed patients have the right to download copies of their electronic health information.

Do only 30% of doctors understand patients’ rights under the law? MD Anderson Cancer Center has given patients FULL downloads of their electronic health records for years.

Your employer already has access to personal medical information such as how often you get check ups and whether you’re taking prescription mediation through your insurance carrier, but now some companies are beginning to monitor where you shop and what you eat.

Some key quotes from the article:

“…But companies also have started scrutinizing employees’ other behavior more discreetly. Blue Cross and Blue Shield of North Carolina recently began buying spending data on more than 3 million people in its employer group plans. If someone, say, purchases plus-size clothing, the health plan could flag him for potential obesity—and then call or send mailings offering weight-loss solutions.”

“Some critics worry that the methods cross the line between protective and invasive—and could lead to job discrimination. ‘It’s a slippery-slope deal,’ says Dr. Deborah Peel, founder of Patient Privacy Rights, which advocates for medical-data confidentiality. She worries employers could conceivably make other conclusions about people who load up the cart with butter and sugar.”

“Analytics firms and health insurers say they obey medical-privacy regulations, and employers never see the staff’s personal health profiles but only an aggregate picture of their health needs and expected costs. And if the targeted approach feels too intrusive, employees can ask to be placed on the wellness program’s do-not-call list.”

PPR was deeply saddened by the loss of one of our greatest privacy heroes, Mr. Alan F. Westin, the “father of modern day privacy” and the nation’s most respected academic authority on public attitudes toward health privacy. We are grateful to have had the opportunity to honor him and his tremendous work as one of PPR’s first Louis D. Brandeis Privacy Award recipients in 2012. He truly was a remarkable man whom we will miss dearly, though we know the extraordinary contributions he made to the field of privacy law are everlasting.

Picture a box with 2,000 or 10,000 puzzle pieces inside—any one puzzle piece reveals nothing about the picture. But when all the pieces are assembled, an incredibly detailed picture FULL of information is created.

The data mining industry—including Google, Facebook, Acxiom and thousands more unknown corporations and foreign businesses—assembles the puzzle of who we are from thousands of bits of data we leave online. They know FAR MORE than anyone on Earth knows about each of us—more than what our partners, our moms and dads, our best friends, our psychoanalysts, or our children know about us.

The UK study (abstract below) shows how easy it is for hidden data mining companies to intimately know us (and sell) WHO WE ARE.

Most Americans are not aware of the ‘surveillance economy’ or that data miners can easily collect intimate psychological and physical/health profiles of everyone from online data.

The study:

-“demonstrates the degree to which relatively basic digital records of human behavior can be used to automatically and accurately estimate a wide range of personal attributes that people would typically assume to be private”

-“is based on Facebook Likes, a mechanism used by Facebook users to express their positive association with (or “Like”) online content, such as photos, friends’ status updates, Facebook pages of products, sports, musicians, books, restaurants, or popular Web sites”

-correctly discriminates between:

-Homosexual and heterosexual men in 88% of cases

-African Americans and Caucasian Americans in 95% of cases

-Between Democrat and Republican in 85% of cases

-For the personality trait “Openness,” prediction accuracy is close to the test–retest accuracy of a standard personality test

The “surveillance economy” is why the US needs FAR STRONGER LAWS at the veryleast to prevent the hidden collection, use, and sale of health data, including everything about our minds and bodies, unless we give meaningful informed consent.

This urgent topic, ie whether the US should adopt strong data privacy and security protections like the EU—will be debated at the 3rd International Summit on the Future of Health Privacy June 5-6 in DC (it’s free to attend and will also be live-streamed). Register at: www.healthprivacysummit.org

Everyone knows that securing data is hard, but in healthcare much is still not even encrypted. 2012 broke the record for the most data breaches.

-“With 2,644 incidents recorded through mid-January 2013, 2012 more than doubled the previous highest year on record (2011)”

“The latest information and research conducted by Risk Based Security suggests that organizations in all industries should be on notice that they face a very real threat from security breaches. Whether it is the constantly increasing security threats, ever-evolving IT technologies or limited security resources, data breaches and the costs related to response and mitigation are escalating quickly. Organizations today need timely and accurate analytics in order to better prioritize security spending based on their unique risks.”

Some key statistics:

“The Business sector accounted for 60.6 percent of all 2012 reported incidents, followed by Government (17.9%),Education (12.0%), and Medical (9.5%). The Business sector accounted for 84.7 percent of the number of records exposed, followed by Government (12.6%), Education (1.6%), and Medical (1.1%).”

“76.8% of reported incidents were the result of external agents or activity outside the organization with hacking accounting for 68.2% of incidents and 22.8% of exposed records in 2012. Incidents involving U.S. entities accounted for 40.7% of the incidents reported and 25.0% of the records exposed.”

Here is a recent article about SnapChat, which makes pictures and videos shared via the Internet disappear 10 seconds after they are seen. Internet technologies constantly collect and use personal data without consent. American health IT systems do the very same thing: constantly collect and use sensitive personal health data without consent. New technologies that ‘erase’ data after a single use could prevent secondary collection, disclosures, and sales of everything from our diagnoses to prescription records to DNA. We are constantly told young Americans don’t care about privacy. Would you be surprised to learn that’s wrong? The truth is the majority of people, young and old, want to control the use of personal data:

-“88 percent of participants from ages 18 to 24 responded that there should be a law requiring websites and advertising companies to delete all stored information about an individual upon request”

-“94 percent of people from 45 to 54 also supported the idea”

“The default setting for almost everything people share online is that it will live for eternity in the cloud” —-we are forced to surrender control of personal information just to be online. Who believes the US public agreed that total surveillance is a fair price for using the Internet?

Since we can’t STOP personal data from being collected, technologies like Snapchat and Wickr that make data “erasable” are critical tools to help restore control over personal data.

Americans want the right to be forgotten, BUT FIRST AND FOREMOST, our constitutional RIGHT TO BE LET ALONE should be restored in the digital age.

KEY QUOTES from the article about Snapchat:

-“In the U.S., Snapchat was the second-most popular free photo and video app for the iPhone in early February, just behind YouTube and ahead of Instagram.”

-Pew Research Center survey found that 57 percent of all app users “have either uninstalled an app over concerns about having to share their personal information, or declined to install an app in the first place for similar reasons.”

-A January 2013 study by the Ponemon Institute… found social media to be among the least trusted industries when it comes to protecting customers’ privacy online.

-[Snapchat’s] rapid growth demonstrates a huge business opportunity—namely, services aimed at the increasing number of people worried about their social media footprints.

-researchers at the University of California at Berkeley found that ….young Americans ….[are] as anxious as their parents about their permanent social records.

-88 percent of participants from ages 18 to 24 responded that there should be a law requiring websites and advertising companies to delete all stored information about an individual upon request

-94 percent of people from 45 to 54 also supported the idea

-“The early adopters of Snapchat are teens in the U.S.”

-“Whenever I ask someone, do they want control over the messages and media that they send to others, the answer 100 percent is yes,” says Sell. “There’s no question that this has mainstream appeal.”

-Sell talks of private communication as “a universal human right” that largely doesn’t exist in the current digital landscape in which big data companies are continuously harvesting and mining information about our every online utterance.

Unfortunately, the “Consumer Privacy Bill of Rights” exempts all health data, leaving the flawed HIPAA Privacy Rule that eliminates our control over personal health data in effect. The 563 page Omnibus Privacy Rules adds strong data security protections and stronger enforcement of violations for some health data holders and users, but not all. But it does not restore patients’ rights to consent before personal health information is accessed or used, even though the right to control health information has been the law of land for centuries and is the key ethic in the Hippocratic Oath (requires doctors to keep information private and not share it without consent).

US citizens will not trust their physicians or electronic health systems unless they control who can see and use their records, from diagnoses to DNA to prescriptions.

The UK government proposes to collect citizens’ health data in a “giant information bank”. “A document outlining the scheme even raises the prospect of clinical data being passed on or sold to third parties”.

Quotes:

-Doctors will be forced to hand over sensitive information about patients as part of a new programme called Everyone Counts.

-The files will be stored in a giant information bank that privacy campaigners say represents the ‘biggest data grab in NHS history’.

-Ross Anderson, professor of security engineering at Cambridge University, said: ‘Under these proposals, medical confidentiality is, in effect, dead and there is currently nobody standing in the way.’

-encourage “collaboration between the health service and the life sciences industry”

-“make it easier for drug companies to run clinical trials in hospitals and to benefit from the NHS’s vast collection of patient data”.

The tens or hundreds of billions generated annually by sales of American citizens’ electronic health information are an attractive model for the UK and EU given the dire economic situation in the EU. It’s hard to know how large the market for health data is or how health data is used without a data map. See Professor Sweeney explain theDataMap research project at: http://tiny.cc/etyxrw

Americans can’t control who sees or uses their health data. Will UK citizens suffer the same fate?

Unique patient identifiers pose enormous implications for patient control and privacy. Dr. Deborah Peel is quoted in this article explaining how detrimental UPIs will be for patient trust and safety. To view the full article, please visit Rekindling the patient ID debate.

Key Quotations:

“The idea of unique patient identifiers (UPIs) is not a concept extracted from the next dystopian novel. It could very well be reality in the not-so-distant future. The question remaining, however, is whether or not the benefits of such technology outweigh constitutional privacy and patient trust concerns.”

“Deborah Peel, MD, founder of Patient Privacy Rights, and a fierce opponent of UPIs, writes in a Jan. 23 Wall Street Journalarticle, ‘In the end, cutting out the patient will mean the erosion of patient trust. And the less we trust the system, the more patients will put health and life at risk to protect their privacy.’

Peel points to the present reality of patient health information – genetic tests, claims data and prescription records – already being sold and commercialized. ‘Universal healthcare IDs would only exacerbate such practices,’ she avers.”